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upcoming
events

  • Bone Marrow Stem Cell Donation Awareness Month
    Bone Marrow Stem Cell Donation Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Bone marrow and stem cell donation awareness days are crucial for increasing the number of potential donors and ensuring that patients in need of transplants receive the life-saving treatment they require.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Sat, 01 Aug
    Online Platforms
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Sat, 01 Aug
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • RDSA 2026 Family Fun Day_JHB
    RDSA 2026 Family Fun Day_JHB
    Thu, 24 Sept
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    Join us for a fun-filled Family Day where families, friends, and community members come together to connect, relax, and create lasting memories. Here you will enjoy games, outdoor activities, quality family time, and the opportunity to build meaningful connections.
  • National Polio Eradication Week
    National Polio Eradication Week
    Thu, 29 Apr
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.

At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.

 

We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

upcoming external fundraisers
  • Bone Marrow Stem Cell Donation Awareness Month
    Bone Marrow Stem Cell Donation Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Bone marrow and stem cell donation awareness days are crucial for increasing the number of potential donors and ensuring that patients in need of transplants receive the life-saving treatment they require.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Sat, 01 Aug
    Online Platforms
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Sat, 01 Aug
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • RDSA 2026 Family Fun Day_JHB
    RDSA 2026 Family Fun Day_JHB
    Thu, 24 Sept
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    Join us for a fun-filled Family Day where families, friends, and community members come together to connect, relax, and create lasting memories. Here you will enjoy games, outdoor activities, quality family time, and the opportunity to build meaningful connections.
  • National Polio Eradication Week
    National Polio Eradication Week
    Thu, 29 Apr
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.

  • Bone Marrow Stem Cell Donation Awareness Month
    Bone Marrow Stem Cell Donation Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Bone marrow and stem cell donation awareness days are crucial for increasing the number of potential donors and ensuring that patients in need of transplants receive the life-saving treatment they require.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Sat, 01 Aug
    Online Platforms
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Sat, 01 Aug
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • RDSA 2026 Family Fun Day_JHB
    RDSA 2026 Family Fun Day_JHB
    Thu, 24 Sept
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    Join us for a fun-filled Family Day where families, friends, and community members come together to connect, relax, and create lasting memories. Here you will enjoy games, outdoor activities, quality family time, and the opportunity to build meaningful connections.
  • National Polio Eradication Week
    National Polio Eradication Week
    Thu, 29 Apr
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.

ACTIVities

Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.​ 

#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

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No events at the moment

community events

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates. 

  • Bone Marrow Stem Cell Donation Awareness Month
    Bone Marrow Stem Cell Donation Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Bone marrow and stem cell donation awareness days are crucial for increasing the number of potential donors and ensuring that patients in need of transplants receive the life-saving treatment they require.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Sat, 01 Aug
    Online Platforms
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Sat, 01 Aug
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • RDSA 2026 Family Fun Day_JHB
    RDSA 2026 Family Fun Day_JHB
    Thu, 24 Sept
    24 Sept 2026, 12:00 – 16:00
    51 Donovan St, 51 Donovan St, Glen Austin AH, Midrand, 1685, South Africa
    Join us for a fun-filled Family Day where families, friends, and community members come together to connect, relax, and create lasting memories. Here you will enjoy games, outdoor activities, quality family time, and the opportunity to build meaningful connections.
  • National Polio Eradication Week
    National Polio Eradication Week
    Thu, 29 Apr
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.

webinars

RDSA-Webinars.gif

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.

 

Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us. 

No events at the moment

conferences

Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. 

No events at the moment

awareness months

Awareness months serve to draw attention to and create awareness of illnesses and conditions.

 

With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.

upcoming awareness months

  • Bone Marrow Stem Cell Donation Awareness Month
    Bone Marrow Stem Cell Donation Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Bone marrow and stem cell donation awareness days are crucial for increasing the number of potential donors and ensuring that patients in need of transplants receive the life-saving treatment they require.
  • Spinal Muscular Atrophy Awareness Month
    Spinal Muscular Atrophy Awareness Month
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Spinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
  • Gastroparesis Awareness Month
    Gastroparesis Awareness Month
    Sat, 01 Aug
    Online Platforms
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Gastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
  • Auto-inflammatory Awareness Month
    Auto-inflammatory Awareness Month
    Sat, 01 Aug
    01 Aug 2026, 00:00 – 31 Aug 2026, 23:50
    Online Platforms
    Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
  • National Polio Eradication Week
    National Polio Eradication Week
    Thu, 29 Apr
    Online Platforms
    29 Apr 2027, 00:00 – 05 May 2027, 23:50
    Online Platforms
    National Polio Eradication Week is a significant campaign in South Africa aimed at raising awareness about immunisation and the prevention of polio.
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Physical Address

Kingfisher House, 39A Kingfisher Road, Fourways 2191 Johannesburg,

South Africa

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

Kingfisher House, 39A Kingfisher Road, Fourways, 2191, South Africa 

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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